28 August 2013

One of the outcomes I requested after being verbally abused in a taxi in July was that all drivers receive ongoing disability awareness training. I don't want them to receive training on entering employment, but at regular intervals, and I'd also like all offending drivers to receive training immediately after a report is made. I asked for people with disabilities to have a high level of input into the training - including direction of and inclusion in education content.

My contact at 13Cabs told me that there is an education DVD being produced, but it's on hold due to a lack of participants.

She's asked me if I know people with a wide range of disabilities who would like to get involved in starring in the DVD. I said OF COURSE I DO!

So, if you are in Melbourne, have a disability, and want to be involved in educating taxi drivers in disability awareness, please let me know (and leave your email address with me) so I can pass your name on. Contact me via the contact form if you want to keep your email off the Internet.

Thank you!

(If I am honest, I am not sure things would have progressed if I had not followed things up. I was told that a disability organisation did not respond to the call for people with disabilities, and the taxi company is waiting for another incident similar to mine to arise to generate greater public interest. Surely my incident generated enough public interest! I dont want this happening to anyone else. And I hope those two responses aren't a final indication of the level of commitment the taxi industry has to educating drivers about disability. Disappointing. BUT - I will continue to progress this issue and hold hope that positive change will occur as a result of driver education.)

I have spent the weekend soaking up inspiring conversations at the Melbourne Writers Festival. The weekend started with Tavi Gevinson's keynote and interview with Estelle Tang at the Athenaeum (view part of Tavi's keynote and audience interviews on the Melbourne Writers Festival blog, and view a picture of Tavi and Estelle on Tavi's Instagram). This was Tavi's second major keynote in Australia - she spoke at the Sydney Opera House the previous week, and was present at a number of events, including afternoon tea at Wesley College, inspiring girls who look up to her in adoration. That quote above sums up my thoughts about everything I've heard at the Melbourne Writers Festival so far. I've come across these conversations at just the right time. I feel inspired and motivated, and have a head full of thoughts. Like Tavi, I have much wonder for what's to come. I took notes furiously, and here's what I took away.

Lady Gaga called Tavi Gevinson "the future of journalism". After seeing her on Friday night, I'd say she's the future of the world - definitely a positive role model. She's 17, edits and art-directs online magazine Rookie Mag (with 80 paid staff on the books), maintains her own blog The Style Rookie, has written for magazines including Harpers Bazaar, Garage and Lula, is a stylist, and moves between being a fangirl and BFF to her idol Taylor Swift ("Taylor Swift was a good girl to consult on the breakup [with her boyfriend] front", Tavi quipped).

She spoke intelligently and maturely - far beyond her years. She was funny and self deprecating, yet maintained that teenageness - smatterings of "whatevs" used throughout her talk. And she's so busy! She said that she goes to school, goes home to do work for two hours, fits in some homework, and manages to spend time with friends (as long as she can respond to important emails on her phone). She gets stuff done by not procrastinating on Facebook. Wouldn't we all?

Tavi has grown up on the Internet. She said if it wasn't for the Internet, she wouldn't have been taken on this career path. Because she has grown up online, and that's where her career is, she tries to maintain some privacy by keeping special moments to herself.

She started her blog age 11 - launching a career as a stylist, and being invited to fashion shows such as New York Fashion Week, much to the disdain of some experienced editors in the fashion industry. To this Tavi said she can't believe that adults can be so childish. She gave some great advice about criticism: "you don't have to seek out criticism [by reading comments]." "I think, would Beyonce be doing this? NO! She'd close the computer and go and be awesome." Love that!

Tavi spoke a lot about her work on the Internet being a blocker to authenticity and originality: "it was intimidating to write when I feel that everything has been said", she said. A year ago she was diagnosed with depression - she thought that it may spur on some creativity, like so many of the troubled artists that have been members of The 27 Club, but she still felt overwhelmed, saying she felt "nothing I wrote was good." I listened to an interview with Tavi on a podcast where she said that she worries about no longer being good at what she does, but then said that overall she just wants happiness - that work doesn't have to have public acclaim for the creator to be proud of it. Tavi's candidness and introspection shows that while she is intelligent, driven and successful, she is also fragile.

Still just a teenager, still at high school, Tavi said "being a teenager is just like being a caricature of a real [adult] person." She said that teenagers' feelings are heightened because they are experiencing everything for the first time. I can't get over her level of analytical thinking, intelligence, introspection and comfort in being herself at such a young age.

She seeks solace in fangirlism - something I can relate to so much. She calls herself a "professional fangirl", and said "being a fangirl is one of the most happying things anyone can do." Fangirlism is both an expression of individuality and something that brings people together. Tavi said "you might look uncool for expressing enthusiam" - I identified with that a lot. Tavi said that it's ok not to like high-brow everything - she juxtapositions her fandom of One Direction alongside Fleetwood Mac. She also spoke about how fans of one idol can tend to look down on fans of other idols - "let others like stuff", she said. And lastly on fangirlism, for now: "stop worshipping idols, humanise them, and realise you've got a place next to them", she said. My heart skipped a beat hearing this. I have so much more to write about fangirlism after seeing Tavi - I thank her for the inspiration!

While Tavi spoke of fangirlism, many of the audience members were fangirls toward Tavi, cheering and laughing, and also spoke of their fandom for their own idols. An audience member asked her if she'd like to return to Australia to attend a Beyonce themed party later in the year. Tavi said while that sounds awesome and she'd love to, it doesn't sound like a realistic venture for her.

Her keynote showed how well read she is, referencing JD Salinger, Chris Kraus (she showed a quote from I Love Dick that I cannot stop thinking about and need to find now! - something like "there's one of you and a million of us". Does anyone know?) and Rashida Jones. Tavi finds a way to make everything she's inspired by relate to her experience - song lyrics, light in film and quotes from literature. She spoke of cataloguing and journaling - almost to the point of obsession. She said that with every journal she starts, she reinvents herself to match the theme of her journal - her style, handwriting, soundtracks. Her deep-thinking nature, I am sure, is both a blessing and a luxury.

Tavi's got the rest of her life before her - it's hard to believe that she's only 17 - but she's already accomplished so much. She said apart from "having a folder on my desktop titled 'World Domination'", she doesn't know what she wants to do in the future. She will finish her last year of high school when she returns home to Chicago from this trip to Australia, and take a year off before going to college. I expect she's driven and intelligent enough to educate herself to an academic standard without formal education.

I did not meet Tavi but Cheryl snapped this photo of me with Tavi in the background. The queue (full of extremely stylish girls and women) to enter the Athenaeum for both her talk and signing was enormous - Cheryl was kind enough to get the Rookie Yearbook One signed for me. The Rookie Yearbook is a compilation of the first year of Rookie Mag's writing and art - a beautiful package. While it's aimed at a teenage audience, I can relate and feel inspired, it seemed that from the age of the audience (an equal mix of teens and adults) do too. Rookie Yearbook Two will be out in September - Tavi said it will be more for girls and boys than the previous issue.

Rookie Mag holds meet-up events for young Rookies (there was one at the Melbourne Writers Festival over the weekend - check out Carolyn's blog for awesome photos of Rookie Day). The event at the Athenaeum felt like a Rooke meet-up. There was so much inspiration, enthusiam and community spirit in the room. One of my favourite things about seeing Tavi was meeting all the wonderful people at the Athenaeum. I met bloggers I already knew: Cheryl, Carly and Pip - who wrote an amazing wrap of the Tavi event - and had a lot of lovely women coming up to me to tell me they're fans of my blog. Hello and thank you Estelle, Norma, Ash and Rachael!

23 August 2013

It's been horribly windy in Melbourne these past few weeks. It's cold too, rainy most days, and the sun struggles to pierce the grey. Metal mimics the weight of plastic, sturdy objects are blown a few feet off the ground. Wind is tiring, freezing, mood altering. I even think inanimate objects are weary of the wind - imagine being a flag - its thin body flapping, stretched, bending and blowing faster, longer and more out of control than it ever signed up for?! That forced change must be exhausting.

I wrote about weakness, change and grief earlier in the month. I've taken stock and evaluated how I've coped. Overall I'm doing ok. Good even. I am having fun and seeing personal growth. I'm tired but I'm accomplished. I'm happy.

Change seems so frightening - the prospect of newness is daunting until that newness becomes routine. There's less apprehension and more confidence. And there's comfort knowing that the future is bright, even though things won't be the same. Now I am living the change, it's not as bad as I imagined.

I saw that jewelled web hanging from tree branches at the Abbotsford Convent last week. The wind was icy and hurt my eyes. But the artwork brightened the day. I forgot the wind and saw its shimmer. Doesn't it look beautiful against the crisp blue sky? That jewelled web is strong and sparkling, even when it's blowing a gale. That's how I resolve to embrace this change. Strong and sparkling.

21 August 2013

It's hard to describe the pain of sore skin. It's burning, throbbing, restricting, drying and weeping simultaneously, inflamed, scraping, papery, raw. The pain chips away at my emotional armour, making me thin skinned figuratively and literally. There's days spent in bed resting at home and having salt baths and Panadol, or days spent in hospital bandaged like a mummy in salty wet compresses hooked up to a drip (I much prefer the former). I don't sound sick. And my mind still works.

And then there's the challenge of being judged for looking different. There's the stares, the pointing, jaws agape, stupid questions and hurtful comments. I keep my head held high, despite.

People asked me how I can be resilient whilst experiencing pain and ignorance. Some have told me they could not face the world if they were in my skin. I've just got to continue. This is the life I've been given and I'm going to live it to the full. It'd be tiring to let the hard times get to me. I'd be lost without a full life. I believe happiness is a choice, and with happiness there's hope. I've chosen to make the best of what may have been a difficult situation.

I've chosen a good life, and there are so many things in my life that I love. There's my family and friends, my day job, the amazing things that have happened through blogging - freelance writing and speaking - travel, seeing bands, eating great food, meeting amazing people. These things in my life aren't accidental. They've come through hard work and ambition. They've come through a choice to be happy, a choice to face the world, despite. There's a line in one of my favourite songs - Fans by Kings of Leon - Caleb sings "Those rainy days they ain't so bad when you're the king". When I hear this song I smile, knowing it's true for me. This choice to be happy has brought me opportunities, and so with for minute of pain, there's an hour of joy.

I've been thinking a lot about resilience since attending a seminar about it for my day job. I've considered its role in happiness and hope, and also health. Perhaps if I wasn't so resilient, my skin would be a lot worse.

Professor Ed Diener, a founder of positive psychology, speaks of resilience. He says

''Resilience is your ability to bounce back from bad things. All of us have bad things in our lives. Some of us have had worse things, but all of us are going to have problems … Resilience is the fact that, yes, those things bother you, and they make you sad briefly, but then you bounce back.

''How do you bounce back? You bounce back by saying these things happen to everyone and I am going to move on and I am going to deal with the problem to the extent I can. And what I can't change, I'm going to live with and reset my goals and move on in life.

''The people who are able to say that are the people who are really going to be happy... So [resilience] is really the ability to move beyond problems.''

If resilience is a measure of how quickly we bounce back, I could be an Olympic trampoline. "This is just how it is", I shrug. "I'll feel less sore soon", I tell my loved ones who are frustrated for the pain I experience. I know I will have days when I am sore. I always tell myself there is light at the end of the darkness. I've come to accept this life - and I'm very happy.

While I am very resilient, I don't hide the physical pain of Ichthyosis. I was recently very upfront about my physical pain, and my honesty really saddened a mother of a young boy with Ichthyosis. She told me her heart hurts knowing the pain that her son and others affected by Ichthyosis experience, and she wishes there was a cure for us.

I reminded her that I don't complain often, and that I so often celebrate the great things in life. I told her there's hope for her son. I am so mindful of setting the example that life can be very good with Ichthyosis, and there's hope for everyone with this condition. Some days are hard, but mostly they are wonderful. I never say I suffer from ichthyosis. I always say I am living with it. That's the choice I've made, and that's brought me happiness and hope.

This post was originally written for the Voices of 2013 blogging competition, which I am a finalist in.

19 August 2013

Last Friday I caught up with Samuel Johnson from Love Your Sister while he's spending some time in Melbourne.

You may remember my interview with him earlier in the year before he set off on an epic unicycle ride around Australia, raising money for and awareness of breast cancer. That is 15,000 km and a $1 Million goal. Samuel's sister Connie is dying from breast cancer and Samuel's unicycle trip and activism is one of her wishes.

Samuel has the most incredible spirit, generosity and determination - his commitment to Connie's wish is so admirable.

I've been following his trip on social media and have been in awe at the photography documenting the places he's been to, and the generosity of Australians he's met. I asked him a little about his journey (it's six months since he departed from Federation Square) and what more we can do to help. (Apologies for the sound towards the end - it's been extremely windy in Melbourne and it was very blustery on the day we filmed this interview.)

16 August 2013

It’s been my life-long dream to go on radio and play my favourite songs, especially Savage Garden - and last Thursday I did it! I was so excited to have been invited onto Are You Looking At Me? on 3CR - it's a conversation show about equality and difference, with conversations about disability and also the music the guests choose to play. The show is hosted by the lovely Liz Wright - she made me feel so comfortable and I could have spoken to her for hours. I think I've made a great new friend. It was a great afternoon having a chat about blogging life and music. I did sing in the studio (mics off) and I did have a cider. Doing the radio interview was ironic given I wrote about conversations that day. Listen to my interview here.

This little collection was really hard to curate. I love so many bands, and all music has had some sort of impact on my life. But alas! I was limited to three songs! I like Australian music and good lyrics - these songs fit that bill.

Savage Garden – To the Moon and Back

Darren Hayes has been the love of my life. I first saw Savage Garden’s I Want You video clip on Rage in August 1996 and loved the look and sound of the band. I made a decision that this is the band I was going to love and follow. To The Moon And Back is probably my favourite Savage Garden song, though I have a big list of favourites by Darren Hayes. I particularly love the acoustic version of the song. I’ve seen Savage Garden live three times – the first time was an under 18s show at the now-bulldozed Palace Theatre in St Kilda in 1997 (for $18!), then twice at Rod Laver Arena in 1998 and 2000. I’ve seen Darren solo lots of times, and met him too. Last time I met him I flew to Sydney to see him at the Enmore. About 30 fans waited for him outside after the show. He had lost his voice so couldn’t talk. When it was finally my chance to meet him, I whispered “I love you Darren” and he said “I love you too, Carly”. Neighbourhood noise restrictions prevented me from squealing loudly, but I was squealing inside! I didn’t only develop a love of Savage Garden’s music – the band brought me passion, excitement, a sense of identity and strong friendship. I love being a fan. I love the rush of energy seeing bands live, of meeting the singers and of collecting information about posters about my idols. I have a whole box of Darren Hayes and Savage Garden stuff, plus 90+ CDs that I asked my parents to save when the bushfires were close to their house.

Bob Evans - Nowhere Without You

I first heard Bob Evans (alter ego of Kevin Mitchell) in 2006 during a difficult part of my life. I had escaped an ongoing confidence-destroying situation in Melbourne for four months - I went back to live with my parents to get myself right again. I hated the regional commercial radio stations and so made the switch to Triple J on my 30 minute drive to work. I'd listen to the breakfast show, loving the variety of music, and one day heard Nowhere Without You by Bob Evans. It was catchy, jingly-jangly, singer-songwritery, and made me drum on the steering wheel. Then I heard Bob Evans was the lead singer of Jebediah - that band I was a bit scared of in my teens. I came to love Jebediah because of Bob Evans (I told Kevin that I was too busy listening to Savage Garden back in the day to become a fan of Jebediah). I've been a big fan of KevBob since 2006 - going to a show on every tour he's done since 2006 (except that small show he did when I was flying from London to Los Angeles last year). Two of my favourite moments at his shows have been when he asked me to hold his lyrics on stage at The Tote, and winning a competition to see him at a tiny show at Spotify HQ in Sydney. We chat on Twitter – it’s great that social media enables this. The line "I just can't make it on my own" resonates with me because it signifies me asking my parents for help again.

Silverchair – Miss You Love

Neon Ballroom was the album that got me into Silverchair. I was finally liking a band that was considered cool! I surprisingly enjoy the dark lyrics, and think the theatrical music is very uplifting. Miss You Love is my favourite song on the album, with Emotion Sickness coming a close second. I once wrote a very long blog post analysing Miss You Love. I listened to Neon Ballroom all through year 12. I spent a lot of time in the library “studying” – actually writing poems about boys I’d fallen in love with on the internet. My poetry was inspired by Silverchair and also Douglas Stewart, the Australian bush poet I had studied in year 11. A strange combination! Miss You Love is such an honest song, looking at the struggles Daniel had coping with fame as a young adult. That line “I love the way you love, but I hate the way I’m supposed to love you back” gets me every time.

I've got so many more songs that have influenced me and hope to play some more on radio one day in the future!

15 August 2013

Patrick Reid died last week. He was hit by a car, initially sustaining some grazing to the elbow and minor dizziness. Then, in his partner, Nina's car, on the way to hospital, his speech slurred and he passed out. He was taken into emergency surgery but there was nothing doctors could do for him. A surgeon grimly delivered the news to Nina and Patrick's sister, Kate. Patrick was mid 30s, an anaesthetist and was about to become a father. He was very attractive and loved by many. His death was the top news story on Australian news websites, trended on Twitter and discussed on radio news the following morning. There was a public outpouring of grief. A collective grief.

Yesterday it was Patrick's funeral. Patrick's death has meant Nina Proudman was left to give birth to and raise Patrick's child alone. "How do you grieve for a man and prepare for a baby at the same time?", Nina asked. She was surrounded by her family, and Patrick visited her and her new baby daughter in her imagination.

I was a little sad at Patrick's onscreen death. I watched that episode with Tash - we were debating who might die, looking for little clues within the episode.

I think following along with the Twitter commentary made me feel a little more invested in Patrick's character than I'd ordinarily be. Patrick wasn't my favourite in Offspring (I'm more of a Mick girl), and to be honest, I haven't enjoyed this season as much as the previous two. But seeing others engage in the discussion online made me become involved in the collective grief of a TV character. Seems silly, doesn't it?

Patrick's death didn't make me sob like other TV character deaths - maybe it was because I watched Offspring in company, or maybe it was because of my feelings for Offspring this season? When Lou died in Love My Way, I cried for ages. And I'd watched that episode in isolation from the series - I hadn't seen the show prior to Lou's death. I was also sad when Grace died in Rush - though my fandom for Callan Mulvey (and love for Josh in Rush) probably played a big part. And I cried over Mel Rafter's death in Packed to the Rafters.

Patrick hasn't been in Offspring since episode one, but he's resonated with viewers because of how happy he's made Nina and the baby they were having together. And, let's face it - he's hot.

Do we grieve for Patrick more because he's so hot, I wonder? The online commentary certainly suggests we do.

Many viewers took to social media to voice their grief, and anger towards the writers. There was so much discussion about Offspring the TV show on Twitter that Offspring the bandwondered what all the fuss was about! And Kat Stewart, who plays Billie, admitted that some of the cast got together to watch Patrick's death, and followed the Twitter feed. Have viewers always been this angry or is it spurred on by social media? I guess it's a place to instantly air grief and complaints. The official Offspring Facebook page copped a beating. And some cute admissions:

There also seems to be more real news coverage about Patrick's death than some real deaths. We are seeing a lot talk a lot about certain murders being more prominent than others, and I imagine the excessive coverage of a TV characters death would feel quite insulting and upsetting for those grieving for a loved one in real life. Last week Patrick's death was one of the top stories on both News Limited and Fairfax, throughout the week there have been articles about the impact of Patrick's death, and even yesterday it was a top news story, just to keep the momentum up, I guess. In case we had forgotten PATRICK REID DIED LAST WEEK!

Humorously, even the NSW police commented on his death. Great effort by the social media team!

It was all quite OTT.

TV shows and characters become a big part of our lives. We relate, we want to be friends with them, we feel similar emotions for them as we do for our loved-ones. The mainstream media and social media has made us interact with TV shows in a way we haven't done before. Fairfax has daily recaps of TV shows like Masterchef and Game of Thrones - something I don't entirely agree with, because TV programs are not news. TV has become far more interactive with live tweeting, and also interaction with the actors, reality program contestants and judges, producers and programs/stations' presence on social media. It's definitely an element of media convergence.

While there was outrage over Patrick's death, Offspring carried an important message. What moved me the most was the message about Donate Life that was slipped in. My eyes welled up at Nina being asked about Patrick's organ donor status. Patrick believed in organ donation and he'd discussed his wishes with Nina. Camille was an organ recipient this year, a little over six months ago, and I thought of her during the discussion between Nina and the organ donor coordinator. It meant so much that this important message was being discussed on prime time TV. Especially when Patrick's death had such an impact.

So many people are talking about Patrick Reid's death. It has been the TV death that stopped a nation. Channel 10 pitched the episode of his funeral as "one night of drama you'll truly never forget". I really hope Patrick's fans are influenced by his death enough to consider registering to be an organ donor.

The OTT media coverage aside, the final two episodes of series four of Offspring showed real love between family and lovers, real loss, real grief and real emotions. It covered themes of sudden life change, what it might be like to be left as a single mother prior to birth, and the importance of discussing your wishes to be an organ donor. It was no wonder we felt real emotions. A great job done by the writers.

14 August 2013

The winners of the BUPA Health Influencer blog awards are fantastic people, and I am proud to be in their company. I want to introduce you to them each week, and I encourage you to read their blogs. They've all made a positive difference in their communities and also in their own lives.

Nathalie from Easy Peasy Kids is one of the loveliest women in the world. She's very kind and generous, and passionate about her job as a child behaviour consultant and researcher. Her status updates on Facebook make me smile - she shares funny anecdotes from the children she works with:

"My blog is mainly behaviour related, looking at the bigger picture and simple life lessons. I cover child behaviour and looking at the world through the eyes of a child. The blog started in May 2011. It features many aspects of behaviour from how we can feel as parents, what children may be feeling, behaviour in social media and even my own behaviour.

I hope my blog helps others understand that parents are the best experts at knowing their children. I share a fair amount about life and try to show that we all have our own issues, that what we feel is valid and non comparable. I'd love to see more acceptance of others.

Blogging helps me connect with others, when I cared for mum who had Alzheimer's it felt like I had an amazing online community of friendship and support.

Winning the Bupa Health Influencer award after such a short time blogging blew me away, I suppose it has shown me and hopefully other bloggers that it's not about blogging daily but connecting.

The plans for the blog in all honesty will be pretty much the same, I'd love to commit to blogging more but work keeps me nice and busy.

Tips for new bloggers are write from your heart, don't worry about numbers it's about connecting. Even if you don't get many comments people are reading. Be honest, keep it real, find your own voice, imagine speaking to a friend as you write."

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.